THE HEALING BLOG

​ It's more than just a disease; it becomes you, tries to define you and changes your life forever. Initially, you see yourself as afflicted, as if a parasite had taken up refuge in you. Most wait too long for a diagnosis, and while they do, the answer isn't an answer at all, but a deeper vortex of questions. Medications are tried, money is spent, doctors are seen over and over again as the disease takes further root. You feel yourself slowing, spinning out of control. Most of what you defined yourself as begins to fade, and you start to lose yourself. Depression starts, causing your already sleepless nights to become living nightmares as you hear the repeated voices echo in your head. “You’re not really sick.” “My sister-in-law has Fibromyalgia and she works.” “I'm sorry, there's no cure.” “We can't even pay the electric bill, how will we pay for the house?” The depression begins to answer for you, replying that you’re worthless, that no one loves you, and that it's all just, over. You want your life back; you miss being exhilarated, of laughing until your sides hurt. You can't remember the last time that you felt normal. Your days pass based on a scale of how you feel, never knowing if today will be a good day or a bad day.

​ Slowly,over time, people stop visiting, or make you into a church charity; neither of which you want. And in those alone moments, you hear these replaying in your head. “No one wants you, not even your family believes you.” Depression gives birth to anxiety, which hurts your heart. You can feel the palpitations and blood coursing through your veins, as sheer terror creeps into your chest, that heavy panic that only you know so well. Doctors can't seem to replicate it, or really define the cause, and only offer more prescriptions that you know on the inside, won't work anyway.Each morning, in the early moments of consciousness, you realize where you are. Then you realize that you’re still sick. Pain is often your alarm clock; rising you awake with heavy pain in your legs that you desperately want to rub out. Some mornings, you can't even move your limbs without the help of your partner, and simple tasks like sitting up, climbing stairs, and walking to the mailbox begin to hurt too much.Your comfort space becomes smaller and smaller, because it's not “safe” out there anymore. Everything in your life is now associated with how much pain it will cause you.A day out shopping is two days in bed crying. Your feet ache, you feel fatigued and feverish. Night sweats, cold sweats and sweaty hands and feet… a lot of sweat, basically. You spend countless hours looking out the window and remembering a better time, revisiting past memories, and imagining who you would be had you only made different choices. In your own deep sadness, you develop a deeper understanding of life and it's purpose. You begin to understand what really matters vs. what you thought mattered. Your name used to be followed by a title. It defined you. Now you’re nothing but you, and it feels empty.

​ You watch time go by through windows, Facebook posts, and pictures. You watch your body slowly change as you watch other people living full, rich lives. You become more grateful for those that love you; you see people for they truly are when you can not give them anything in return. Much time is spent in tears, whether from guilt or gratitude. But then something magical happens; something horribly, wonderfully, and magical happens--you eventually hit rock bottom.

You have no more medications to try.

You have no more real friends.

You have no job, no life, nothing to give.

There is nothingness for as wide as your eyes can see; like the gray ocean to the gray sky, it all becomes a blur. You silently wish for death, not for death’s sake, but as the only reasonable release from this demon that now has made you prisoner. No longer a parasite on a host, no. You see your disease as nearly a separate entity from you, yet of you. You battle it. You fight it, and lose more times than not. I cannot tell you how long you'll be in the great nothingness; the same great nothingness Atreyu fought in the Never Ending Story. We each have our own journey, our own time, and our own purpose; given to us to accomplish, each in our own perfectly timed destiny.Nothingness isn't magical. It's the effect of being stripped of everything the world gave you. This happens when you begin to ask yourself who you are in that nothingness. If you have no title, if you have nothing tangible to offer others, who are you? Who would you have wanted to become? You begin to fill that nothingness with dreams of what could have been, and naturally to follow, what could be. I could have been an amazing doctor, but I chose instead to party and make bad choices. What would have become of me had I said no to drugs that day; or had I studied more, listened to my mother, or…fill in the blank. We slowly begin to rebuild out of that nothingness, and what we rebuild can be anything that our imagination allows. We are our own ceiling or stairway to life, even if it's just in our dreams. When that happens to you, you begin to see color again. You smile a little more and maybe take up some long-lost hobbies. You start to realize the beauty of life is in its precious, short time. And since you've lost so much already, you refuse to lose anymore. You always wanted to learn something, so you try. You've always wanted to read that book, or see a sunrise at the beach. You begin to live again, maybe at first out of fear. But the magic is that you’re dreaming again! Where it once was black nothingness, there is now a light, no matter how small and dim in the distance. But YOU know, you can see it. And no matter how much your legs hurt, your stomach burns, or how many tears flow, you’re going to live. You've seen nothingness, and you recreated a life in your minds eye; you can't give up now.You realize that you either have to die, or you have to be reborn.And you choose life.

​They call it an invisible illness, because they don't have it. But it's really an invisible victory only those who have truly suffered in long periods of pain and isolation know. We are united in our journey and the utter grit and strength and determination that it takes to pull yourself out of that nothingness.

Only you will remember lying in bed with the bottle of pills on your dresser; deciding whether to do it today or tomorrow, while hysterically crying and begging for another outcome to prevail so you don't have to make this choice.

Only you will remember watching the moon pass by your window every night; the leaves changing on the trees as seasons change, yet you remain unmoved.

Only you will know what it's like.

You'll be the only one who was there and fought to be free again. And all that they will ever see is that you have an invisible illness. But they are wrong. They will never develop true compassion. They will never have the opportunity to be truly humbled, dependent, or naked. They will continue to rush through their lives never stopping to enjoy the wind in their hair. They'll be impatient behind a slow shopper, or not understand why people without wheelchairs park in the handicapped spot. They won't ever know who their real friends are, or how loved they are by the ones that matter. They will still think their career is what matters most, focused on money, believing it will bring them happiness. They won't get to learn how to accept hard truths like a chronic life long disease. They still get to think they're in charge, and to me, they are the ones with an invisible illness.They are blinded still to the value of life; the shortness of time, or the meaning of true love. Life isn't about the most hash-tagged topic, or how much you have in the bank.It's what we all want to know and live by, but it's what some of HAVE TO learn. The journey bares your body and soul naked to the world. Just when you think you'll never be free, and that your pain and agony will suffocate you, you look back at where you were and who you've become. You realize that there was never nothingness; it was darkness. It was YOU who was blinded. It was your eyes that were closed out of fear, anger, and deep sadness. And not until you were brave enough to open your eyes again were you able to see the light. You had to reexamine your life. You had to find yourself in the darkness when stripped of all the worldly titles, and then you had to dream a better future.

A future where you fight.

A future where you carry the weak on your back and stand up to the bullies.

A future where you speak for the voiceless and those still bound in their own darkness.

An invisible illness? Maybe. But more so, even though your body is weak, your soul is stronger. You are a warrior, a victor of life's cruelest wars.You savor what is to be savored and discard the rest. And you pity those who can't see life for what it really is; too busy, too focused on work. Too focused on their phones or their income; too worried about the unimportant aspects of the world to actually relish any of the joys of the world.

Don’t stay in the nothingness too long friend. I know it's scary out there, and you may get hurt. Something could happen, but I can promise you ONE thing-If you stay in the nothingness, nothing will ever change.

Beautifully written! You can definitely tell it came from deep within your heart.
Thank you for ALL that you do Linda.... Because it's a lot... And yet you so gracefully carry on with such determination & passion to help others change their lives for the better. Thank you...

Reply

Mary Sheppard

2/25/2016 08:59:08 pm

Did you just publish my life history of fibromyalgia?

Reply

Annette Moore

2/4/2017 12:45:43 pm

Well said for all those who suffer from the "great nothingness", and for those who don't understand this devastating disease. Thank you for speaking to all on this subject. ❤️️

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